The Part of Life With Fibromyalgia I Haven’t Told You About

I’m a fairly open person when it comes to physical and mental illness, but I can also be very reserved, especially about my chronic pain and fatigue. It’s not because I don’t want to share about what’s going on with me, but because I don’t want people to think I’m a “whiner” or “attention seeker.” I am neither of those things. In fact, I’m quite the opposite.

A lot of people know I have fibromyalgia. What they don’t know is the reality of what I deal with. They see a positive, silly, young 25-year-old woman on the outside, but they don’t realize how much pain I’m in, or how badly my anxiety is affecting me. I don’t think people really understand the intensity of my conditions. I’ll admit that part of it is my fault, for showing only the good parts of my life on social media, but showing the not so good parts can sometimes come off as attention seeking. I don’t want attention, I want my conditions to stop being stigmatized. I don’t want pity, I want people to understand these illnesses.

Here is the reality of someone with fibromyalgia:

1. Pain

When you tell someone you’re in pain, they don’t really take it very seriously. They usually think that you have a typical headache or back ache. They don’t realize that your whole body is experiencing aches, stabbing pain, needles, numbness, or often times a burning sensation. The also don’t realize that the clothing you’re wearing, or the cloth chair your sitting on could be causing you pain as well. People with fibromyalgia have sensitives to certain fabrics and materials. Some of us (including myself) feel pain in their organs. I’ve had ovarian pain for years, and didn’t know what it was until I was diagnosed with fibromyalgia.

Our pain is often unbearable, and can cause difficulties in every day situations. When I’m going through bad flare-ups, I am sometimes late to work. It seems like no matter how early I wake up, it takes me 30 minutes to an hour to get out of bed because my body is stiff, my hips are locked, and my hands ache. Carrying a grocery basket can cause my hands and elbows to tense up, opening jars is sometimes impossible, household chores can take everything out of you, and the list could go on.

2. Fatigue

Speaking of being late to work, fatigue is another reason it’s so difficult to get out of bed. I could have had the best sleep of my life, but it will feel like I didn’t sleep a wink. For me, chronic fatigue is one of the most difficult symptoms. There have been days I’m nervous to drive long distances because the sun causes really bad fatigue. I work a desk job, but by midday, I feel like I’ve been doing hard labor, and all I want to do is go home and sit on the couch. And good luck trying to schedule anything with me after work. I’ll just be too exhausted to do anything. If you’re able to get me to hang out with you on weekdays, it’s probably because no matter how tired I am, I really need your company.

3. Brain Fog

This is the last symptom I will touch on. Brain fog is a bitch to say the least. Completely forgetting a conversation you had yesterday, having to pause mid sentence because you forgot what you were saying, or stopping a conversation altogether because you can’t think of the right words to use. This is the most embarrassing symptom of fibromyalgia. Feeling incompetent is incredibly frustrating and heartbreaking. I often wonder if people are judging me because of this. I find at times, I can’t even remember how to spell a word when I’m typing. I proofread my text messages, emails, and social media posts multiple times before pressing the “send” or “submit” button. The embarrassment of brain fog causes me so much anxiety. I just want people to know can’t control the way my brain works sometimes.

2. Temperature sensitives. Summers, and especially Winters are often unbearable.

3. Irritable bowel syndrome (IBS).

4. Night sweats/hot and cold flashes.

5. Insomnia.

6. Painful and irregular menstrual cycles.

7. Problems with balance.

8. Tinnitus (ringing in ears).

9. Restless leg syndrome.

10. Rashes and skin disorders.

It’s very common that individuals with fibromyalgia will struggle with different symptoms than others. All symptoms are different for everyone, so it’s difficult to explain to doctors what your symptoms are. Chronically ill patients seem to know about their illness than professionals, and that can be hard when it comes to medications and treatments. We’re all in this together, and we need support and understanding from the people and loved ones in our lives.

I hope this sheds some light on this awful illness. If you know someone living with fibromyalgia, go give them a (gentle) hug and ask what you can do to help them. Just being there to listen could mean the world!